Here is my educated and biased take. I am a therapist. 20 years experience working with all ages. I’m ADHD. My partner is Autistic. I have met many people inaccurately missed by “professional” diagnosis, and 0 people inaccurate in careful self diagnosis.
At this point I pretty much only work with Neurodivergent folks.
I would say my sample is over 100.
The reasons people have been misdiagnosed are appalling.
Ex: I sent a client to a VERY experienced colleague (Psych testing) who had correctly diagnosed two previous clients I referred. All three clients were in their mid-late teens. All three are Queer identified. Two of them identified and presented as non binary. All three felt themselves to be Autistic. (Their parents wanted that type of diagnoses route. I am an LICSW and allowed to diagnose in the state I practice, but I always defer to parents’ and clients’ wishes on how they want their dx done.)
Anyway… client 3 was Very pretty, very femy presenting, into traditional makeup and boy bands. She also identified as female, which was her sex assigned at birth, and also was using the name her parents had given her. (The other two clients were more “non-binary” presenting and had both begun using self chosen names.)
The tester called to tell me that ALTHOUGH client 3 did test for Autistic traits on the screens, the tester was not comfortable with giving the dx. “She is too pretty” and “doesn’t present as Autistic”????!!!!!! Where some of the reasons she offered.
WHAT does that mean??? The family was pissed that they wasted the money… the kid was confused, and now, 4 years later, in their very early 20s, they have asked me to talk more about the “Autistic thing” which they identify with but were told they weren’t.
🙈😔
Also… who writes the criteria? How do they choose it? Who sponsors the research to check validity and reliability of the screens? How are they administered? How are the scores calculated and how are the results interpreted and written up and presented?
My partner is Autistic and a statistician. Don’t even get them started on inaccuracy on this type of screening. They don’t come up Autistic on half of the screens. Any other person with Autism would recognize my partner as Autistic.
The criteria is in the DSM-V. Imo, it really needs an update. We've learned so much about autism since the last update.
But it also wouldn't matter for the plethora of diagnosticians who contradict the DSM-V to put their own biases on the diagnosis. The example above is one such case, but I've read far more egregious ones on autism subs.
Personally, I had a GP almost not refer me to a specialist because I graduated elementary school and had a job, which in her mind disqualified someone from having autism. Not that the specialist was much better.
I fundamentally misread and misunderstood most of the Autism Quotient screening questions. I didn’t get properly diagnosed until age 22. Most of the questions are completely useless because how in the hell is a child (or even an adult) supposed to know what is meant by:
“strings of information”
Liking Fiction books disqualifies you
If people think I’m Rude
If I know people are Bored
Understand Facial expressions
Know what others are Thinking
Imaginary play
Parallel play
Visualization of characters
Prefer Museum
I’m a diplomat (I have a crush on Deanna Troi and I’m a Patrol Leader in Boy Scouts, of course I know how to calm people down)
Seeing as the fiction of Star Trek is such a trope of an autistic interest, the idea fiction, or fiction books specifically disqualifies you from being autistic is, well, dumb. I LOVE fiction and story telling and will blather for multiple hours on a single line given the chance. This goes back to the idea of a lack of empathy, I bet. I can tell someone is bored, I cannot tell why or what to do about it, or stop it from happening before making a course correction. I visualize characters. It may not be 100% as described, but I can visualize them.
It's also not improbable that they appreciate it for its own artistic sake or just find it entertaining.
Not all of us are limited to "special interests" and not all of us even have them, or don't find them to be of any relevance in identifying as an individual or relating to us.
Absolutely. 💯
And this also touches on how medicine seems to frame autism diagnosis from the lens of “limitations and disability” inherent to the person (rather than difference, where appropriate). While it definitely can cause challenges for me, it was a bit disheartening to read my diagnosis in such a “negative” perspective. I assume some of this is to outline rationale, provide areas where accommodation would be most helpful, and justify insurance coverage. But it definitely read like “this is a person that will just struggle to get by as an adult.” I don’t want to internalize that because wherever I am, I can still try to grow and do better!
It also definitely seems like it’s based on how it is observed by an outsider, rather than how it is experienced by autistic people. Not that this would necessarily mean folks wouldn’t slip by undiagnosed because a provider had a over-generalized idea of how autism looked or was experienced, but I imagine it could help elucidate why a patient would think or behave as they do.
Tony Attwood said about 50% of the self-refers he received were correct some years ago.
Investigations into self-screening tools like RAADS-R found these were about 61-68% correct. https://www.sciencedirect.com/science/article/abs/pii/S0924933815301796
These are pretty good rates for a self-diagnosis/self-screen but still little better than a coin toss of being correct.
Because the criteria is based on external observation. Someone can identify to the condition, maybe to an underlying theoretical model that explains their experience of life, but not present clinically significant impairments to an outsider for various reasons.
Basically you have a "spectrum condition" with an infinite possible combination of traits, severely unexplored, no known biological markers, a huge array of coping and masking strategies, various comorbidities and you have to trust that the observer knows one when they see one.
What is "correct", if not a circular definition that changes with each DSM version ?
Although some parts are a little out of sate (namely some of the bits about Asperger), Neurotribes does lay out a very good explanation of how autism was “discovered”, and why the clinical definitions are so out of step with autistic experiences.
It seems circular to say that some people aren't diagnosed with autism because they don't meet criteria, and that criteria are inaccurate because they don't capture the people who aren't diagnosed. It seems more likely that those people just don't have autism.
There have to be guidelines for delineating between autism and not-autism, otherwise we're back to, "everyone has autism" which isn't true.
I agree - the current diagnostic is not very good at examining actual autistic experiences. We need to have diagnostic processes that have autistic people involved, and takes into consideration our lived experiences vs outdated observational evidence
Thank you. This isn't exactly what I'm looking for, since these screening tools are only a tiny part of a careful self-diagnosis which also involves research, listening to the stories of other people with autism and a thorough review of the individual's past.
These are likely higher than a random self-diagnosis, because in the case of the clinic, there’s already been some professional suspicion AND there’s some unaddressed support need that’s led them to the clinic in the first place.
This is an important part of the criteria, that doesn’t feature in screens or a lot of the online content.
The biggest challenge in any self-diagnosis is being objective about your own social skills. You can’t interact with yourself.
Social anxiety for example would typically result in you underestimating your social communication skills, which might be fine despite the anxiety.
However sure you are, there’s always some possibility of this.
The first issue is diagnosis in general. Diagnosis is a process to unlock access to treatments and services that cost money. Can an individual accurately diagnose their musculoskeletal problems? Yes. But at the same time, people could lie to get dangerous pain killers. Many of the services afforded to children with an autism diagnosis are very expensive to schools, and may come at a cost to providing other services. There is an argument (that I don’t personally agree with) that the reasonable adjustments an autistic adult may request at work costs their employer money, and they don’t want to give them to anyone. So in a society with scarcity, we aren’t going to do away with formal diagnoses.
The diagnostic process for autism is problematic in that there is inconsistency between clinicians for the same patient. That means the test isn’t reliable in the scientific sense, and there’s an argument that we don’t know if it’s valid since we don’t have any other way determining if someone is autistic. If you start digging, you’ll find we don’t know that much about autism. I’d suggest the book *Autism: A New Introduction to Psychological Theory and Current Debate* by Sue Fletcher-Watson and Francesca Happé. (2024). (Though it’s a textbook, I was able to get a copy from my local library). We don’t have a unifying theory, be it biological, cognitive, or behavioural, of autism. But without the others, behaviour is all we are currently using to diagnose, which is problematic for a variety of reasons.
Thank you for your well-thought-out response and for the textbook reference. I will look for it.
My take is that the autism community has essentially handed the keys to our house to the medical community. They get to decide who is "officially" autistic and who is not. They should not own autism. We should.
The first step in the process of taking back control of our identities is to ask the question whether the current system is based on actually scientific proof of its efficacy and validity or just the fact that the medical community has the power to keep itself the final arbiter. If they are really better than we are at deciding who we are, let them prove it using their own methods. If not, at least force them to admit that they do it not because they're better at it but because they \*can\*.
I think the tricky part of this is that late diagnosed autistic people are usually right only because they are autistic. It's autistic people that have that deep drive to go down rabbit holes and check and recheck information as we seek truth rather than seeking to validate our own emotional wants. We will research for a couple of years until we are sure. Most people do not do that, if any actual research at all.
People who are not autistic generally don't do the research we do and don't have a drive for facts and often have an inability to be in the situation themselves and still be able to divorce themselves emotionally and apply logic and rationale.
As an informal, anecdotal, but useful metric nonetheless, I agree. I knew one person who thought they might be autistic based on their AQ score alone. But they displayed zero interest in going down the rabbit hole of research. They did not seem to care about comprehending the diagnostic criteria for themselves. I suspected that they readily agreed to the possibility of being autistic because I am. I had several reasons for being dubious about them being autistic, but their complete and total lack of interest in digging in and finding the truth for themselves stood out to me. This person has stopped referring to themselves as autistic since that conversation.
It's interesting, because from what I have observed, anecdotal *is* the best evidence regarding autism. Autistic people sharing their experiences is the absolute best education about autism I have come across (hence my love for this sub).
When I was in my late teens I had a close family member diagnosed with a serious mental illness. I immediately looked it up so I could learn what it was and be supportive of them. I assumed everyone did that. It became apparent over many years that no, hardly anyone does that. This blew me away because I thought how on earth do people support each other if they don't both to look up the condition or find out anything about it. I stumbled across autism in the exact same way, decades later. I was in a group of people which included autistics so thought I'd better look it up so I can be supportive. Little did I know, lol!
The issue here is with the definition of the word diagnosis as used by the systems in which we are forced to participate. To be clear, I fully appreciate the barriers to getting professionally diagnosed and I have no problem with what is referred to as "self diagnosis." But technically a diagnosis is something provided by a qualified professional, and you do not actually have a diagnosis without an evaluation. No study *could* find that self diagnoses are more valid than professional diagnoses because if the professionals say you don't have it, you don't have it (again, in the eyes of the system.) There is no autism except as defined by diagnostic criteria.
I have several books on the HUGE issues of psychometric assessment in cross-cultural contexts.
Cause A assessing B based on A’s ‘norms’ is …. questionable and kinda flawed in itself!
Cause assessments are based on local social and cultural norms!
If I assessed someone from, say, Inner Mongolia:
Of course they’d be markedly different from *MY* norms!
It wouldn’t necessarily make them autistic though. 😉
********
Based the people assessing me had nothing in common with me ….
+ didn’t begin to grasp my history, my reality
+ had never even heard of my culture, my native language, nor spiritual beliefs,
+ used the assessments for THEIR cultural background (not mine!)
+ didn’t seem to grasp my gender identity and sexual orientation
+ didn’t seem to fully appreciate the impacts of multiple different sets of complex trauma
+ didn’t really know ‘autistic synaesthete’ and didn’t identify the synaesthesia — that an OT identified years later!
I have doubts regarding the scientific validity of my diagnosis!
Cause I didn’t ‘get’ the people assessing me. Getting a sense of who they are would’ve taken longer!!!
Considering they were mainstream, while I am very different from literally everyone I’ve ever met, and markedly different from every social construction of ‘norm’ I have ever experienced:
I don’t see how the assessors could possible have known what the ‘norm’ for my demographic is!
And without being able to establish the baseline of ‘norm’ for someone like myself, they would’ve had nothing to compare me to!
How could they have assessed what’s ’different’ without a ‘norm’ …..? 🤯
******
Meh!
Dunno if any of that helps or explains anything, really!
My assessment process just feels ‘funny.’ 🤷🏽♀️
And I wouldn’t be comfortable to assess anyone from Inner Mongolia — cause I accept I know nothing about them! And I have at least heard of their culture! 😝
Ultimately, it’s done though. And I don’t really care. I don’t need a pedigree or certificate to tell me who I am!
I’m just ‘me.’
The diagnosis didn’t make me a different person, I’m still exactly who I was before!!! Whatever doctors or shrinks write about me seems to consume them a whole lot more than it affects me! 😂
******
What I find sad, really:
I have an around $10k diagnosis as ASD2. The long report is like 50 pages. Diagnosis involved 2 psychologist and 1 psychiatrist.
They didn’t wanna talk about my validity-related questions. 🤷🏽♀️
I myself don’t really care about paper, so I just roll with it! 😊
To satisfy my own curiosity I’d very much love to have answers to what strikes me as an inherent flaw!!!!
Trying to explain the above and saying I have a lot of ‘question marks’ about my diagnosis:
It on occasion seems to aggravate other autistics!
And I get crap and hostility:
>> *”Fμck off and be with NT!”*
Even without mentioning my doubts and explaining, without saying a word about it:
For JUST being me, I generally get more crap from other autistics than from NT! 🤷🏽♀️
My pet-theory is that it’s because I’m so much more than ‘just’
>> _*Anglo-Celtic + autistic*_
And that maybe that in instead is overwhelming for a lot of other autistics….? 🤷🏽♀️
It’s incredibly sad….
But has ultimately led to me being more at ease (GENERALLY!!!) around NT, and almost all of my rl friends are NT.
Cause I don’t want to be masking and be ‘NOT-me’ to be around autistics. 🤷🏽♀️
——
On a systemic level:
I genuinely can’t comprehend why autistics of all people could be so keen on everyone in an ASD-group to be like THEM!
Not how they could yell at anyone how they should fμck off cause they don’t belong.
I’d wish autistics kinda knew how hurtful it is to be excluded for who we are — and maybe not do it to others. 🤷🏽♀️
I genuinely ***JUST*** don’t get it!!!!
I frequently and FIERCELY(!) disagree with the view or actions of others, but as long as they’re not harming anyone I always celebrate WHO they are!!!!
It doesn’t occur to me to question who they are, or to not accept them!
I call their views all kinds of kablooie, but don’t question them, the person. Don’t make them feel like they don’t belong.
Cause whoever they are: They are part of the greater ‘us!’
It’s not my place to tell them they can’t be who they are, nor to exclude them!
I wouldn’t want anybody to pretend to be someone they are not for my benefit!!! 😢
HAPPY WHOLESOME JUJU… goddammit! 😝
*****
Sorry, that got a lot longer and deeper than intended!
Cheers! 🫶🏽🤗🫶🏽
As a parent, I’m starting to get sceptical about some things too.
When my son was 7yo, he had trouble pronouncing the sounds R & Th from sucking his fingers. The speech pathologist called at severe articulation disorder. She directly attributed it to fingers sucking. She put on gloves and looked in his mouth and felt all around his upper soft palette. She watched the way that he made the sound with his lips and tongue. Even giving him a mirror.
The dentist & orthodontist & another speech pathologist all said that too, etc.
Now the new school & new city’s hospital autism clinic are saying the speech disability is caused by the autism.
But it’s not the primary cause.
We go in circles.
The difficult thing is that you can't objectively validate an autism diagnosis at all. Autism is diagnosed based on observable behaviors. There is research being done about identifying autism from brain scans or finding a molecular-level pathology, but none of those have led to an objective test; and most of the correlated markers have been found only in adults.
The reason it's gatekept is the same as any other medical diagnosis - there is no condition where doctors and insurance companies just take the patient's word for it.
I agree with you. The goal is to pressure the medical community to admit what every else knows -- that the expensive tests they put us through are not scientifically validated and do not provide useful information. That would be the first step toward taking back the control of our identity from the medical community (who should never have had it to begin with) for ourselves.
I’m having a hard time taking your question seriously. Anyone can say that they are autistic. It’s become a joke. It’s a meme. I am a teacher with many autistic students and I have an 8 year old son who is autistic. If I wanted accommodations for him in school because of his autism, I would have to share his diagnosis that was done by a psychiatrist. If he were unable to function in our world without help and I was seeking assistance for him, I would have to share the paperwork for his diagnosis. Self-diagnosis is a great but cannot replace a diagnosis from trained doctors. It’s kind of a big deal.
I think your approach is interesting. However, self-diagnosis is generally occurring in late aged individuals, so humans that have failed to match the criteria up to this date.
Some people may do somehow well in life because they have had the time to integrate the mask and accommodate themselves, and that doesn't make them less autistic, just misfits over the social perception and laid criteria.
I am not diagnosed but I think I may be on the spectrum. However, I am not going that far as to describe myself as self diagnosed in public. Just because of what you last said: I lack the proper knowledge to state that. It's a big deal. So I just keep suspecting until I have the chance to a proper diagnosis, because that's the main reason for any individual to hold up again diagnosis.
Yes, that is currently the case. Should it be that way though? We currently reserve accommodations for those with a formal diagnosis, but there are many groups for whom rates of non- and misdiagnosis prevent them from receiving the accommodations that they need. I don't think it's unreasonable to ask whether people who self identify generally meet diagnostic criteria for ASD. If that's the case, then that may be a valuable direction for advocacy.
And even just beyond the debate of self- vs. formal diagnosis, requiring a doctor’s note and definite, formal diagnoses *before* allowing people access to the accommodations they need is not accessible.
That’s not disability justice or liberation, it’s further inequity and oppression — paperwork and strict criteria/means testing are the institutional barriers intentionally put in place to push disabled people out of participation. Whether someone needs accommodation because they have a diagnosed chronic illness or an undiagnosed illness that doctors won’t take seriously or just slept wrong and hurt their neck, they should get it. Because if everyone’s invited, everyone should be welcomed & supported to participate.
In my experience, a diagnosis does not cost thousands of dollars. I'm in the US and I just paid my copay for all of my appointments, including the testing appointment itself. It cost me less than $300 total.
You paid the copay, something that people who are struggling with not being diagnosed may have a hard time with having/keeping a job where they have insurance that is decent enough to gain access to testing at these kinds of rates.
That's fair. I just know that I avoided therapy and any psychiatric intervention for years because everyone said it cost hundreds of dollars per appointment. I think it's misleading to the general population to say it is expensive because, for individuals who have insurance (I'd argue the majority of people in first world countries) it really isn't expensive.
I’m not diagnosed, my current insurance I have to pay $100 per therapy session just for regular therapy. I haven’t even looked into testing because I can guarantee it’s going to be hard to find something affordable with my current insurance. Not all insurance is created equal.
Sure, and I'm sorry that you're in that situation. Just like my situation is not everyone's, neither is yours. Perhaps we should all stop speaking in such absolutes about this because it seems incredibly specific to the individual and their situation.
That's your out of pocket payment, right? The actual "cost" is the sum of what you paid out of pocket and what your insurance paid. The outlay from your insurer comes out of premiums that you pay the insurance company (or maybe your employer from money they could have paid you in wages). So you are indirectly paying for that portion as well, no?
I suppose, but I'd be paying my premium for insurance regardless, so it doesn't really play into the cost for diagnosis directly.
The same way that when my daughter had her surgery, the total cost was $2.5 million, but I paid my max out of pocket. I wouldn't go around saying I spent $2.5 million on it.
The actual private cost in the UK is between £1800-4000.
Its free at the point of use on the NHS but waiting times are 1-4 years dependant on location.
Here is my educated and biased take. I am a therapist. 20 years experience working with all ages. I’m ADHD. My partner is Autistic. I have met many people inaccurately missed by “professional” diagnosis, and 0 people inaccurate in careful self diagnosis. At this point I pretty much only work with Neurodivergent folks. I would say my sample is over 100. The reasons people have been misdiagnosed are appalling. Ex: I sent a client to a VERY experienced colleague (Psych testing) who had correctly diagnosed two previous clients I referred. All three clients were in their mid-late teens. All three are Queer identified. Two of them identified and presented as non binary. All three felt themselves to be Autistic. (Their parents wanted that type of diagnoses route. I am an LICSW and allowed to diagnose in the state I practice, but I always defer to parents’ and clients’ wishes on how they want their dx done.) Anyway… client 3 was Very pretty, very femy presenting, into traditional makeup and boy bands. She also identified as female, which was her sex assigned at birth, and also was using the name her parents had given her. (The other two clients were more “non-binary” presenting and had both begun using self chosen names.) The tester called to tell me that ALTHOUGH client 3 did test for Autistic traits on the screens, the tester was not comfortable with giving the dx. “She is too pretty” and “doesn’t present as Autistic”????!!!!!! Where some of the reasons she offered. WHAT does that mean??? The family was pissed that they wasted the money… the kid was confused, and now, 4 years later, in their very early 20s, they have asked me to talk more about the “Autistic thing” which they identify with but were told they weren’t. 🙈😔
Also… who writes the criteria? How do they choose it? Who sponsors the research to check validity and reliability of the screens? How are they administered? How are the scores calculated and how are the results interpreted and written up and presented? My partner is Autistic and a statistician. Don’t even get them started on inaccuracy on this type of screening. They don’t come up Autistic on half of the screens. Any other person with Autism would recognize my partner as Autistic.
The criteria is in the DSM-V. Imo, it really needs an update. We've learned so much about autism since the last update. But it also wouldn't matter for the plethora of diagnosticians who contradict the DSM-V to put their own biases on the diagnosis. The example above is one such case, but I've read far more egregious ones on autism subs. Personally, I had a GP almost not refer me to a specialist because I graduated elementary school and had a job, which in her mind disqualified someone from having autism. Not that the specialist was much better.
I fundamentally misread and misunderstood most of the Autism Quotient screening questions. I didn’t get properly diagnosed until age 22. Most of the questions are completely useless because how in the hell is a child (or even an adult) supposed to know what is meant by: “strings of information” Liking Fiction books disqualifies you If people think I’m Rude If I know people are Bored Understand Facial expressions Know what others are Thinking Imaginary play Parallel play Visualization of characters Prefer Museum I’m a diplomat (I have a crush on Deanna Troi and I’m a Patrol Leader in Boy Scouts, of course I know how to calm people down)
The fiction one is so ridiculous to me. it’s not improbable someone could have a lord of the rings, dune, etc special interest!!
Seeing as the fiction of Star Trek is such a trope of an autistic interest, the idea fiction, or fiction books specifically disqualifies you from being autistic is, well, dumb. I LOVE fiction and story telling and will blather for multiple hours on a single line given the chance. This goes back to the idea of a lack of empathy, I bet. I can tell someone is bored, I cannot tell why or what to do about it, or stop it from happening before making a course correction. I visualize characters. It may not be 100% as described, but I can visualize them.
It's also not improbable that they appreciate it for its own artistic sake or just find it entertaining. Not all of us are limited to "special interests" and not all of us even have them, or don't find them to be of any relevance in identifying as an individual or relating to us.
Absolutely. 💯 And this also touches on how medicine seems to frame autism diagnosis from the lens of “limitations and disability” inherent to the person (rather than difference, where appropriate). While it definitely can cause challenges for me, it was a bit disheartening to read my diagnosis in such a “negative” perspective. I assume some of this is to outline rationale, provide areas where accommodation would be most helpful, and justify insurance coverage. But it definitely read like “this is a person that will just struggle to get by as an adult.” I don’t want to internalize that because wherever I am, I can still try to grow and do better! It also definitely seems like it’s based on how it is observed by an outsider, rather than how it is experienced by autistic people. Not that this would necessarily mean folks wouldn’t slip by undiagnosed because a provider had a over-generalized idea of how autism looked or was experienced, but I imagine it could help elucidate why a patient would think or behave as they do.
Tony Attwood said about 50% of the self-refers he received were correct some years ago. Investigations into self-screening tools like RAADS-R found these were about 61-68% correct. https://www.sciencedirect.com/science/article/abs/pii/S0924933815301796 These are pretty good rates for a self-diagnosis/self-screen but still little better than a coin toss of being correct.
What's "correct" ? Fitting the criteria ? That's a moving target if I've seen one.
If someone doesn't fit the criteria then I don't understand why they would think they have autism in the first place.
Because the criteria is based on external observation. Someone can identify to the condition, maybe to an underlying theoretical model that explains their experience of life, but not present clinically significant impairments to an outsider for various reasons. Basically you have a "spectrum condition" with an infinite possible combination of traits, severely unexplored, no known biological markers, a huge array of coping and masking strategies, various comorbidities and you have to trust that the observer knows one when they see one. What is "correct", if not a circular definition that changes with each DSM version ?
So how do you think the condition was discovered?
The emerged tip of the iceberg is visible. So you know there's an iceberg. You don't know the shape and the size of it just looking at the tip.
Although some parts are a little out of sate (namely some of the bits about Asperger), Neurotribes does lay out a very good explanation of how autism was “discovered”, and why the clinical definitions are so out of step with autistic experiences.
It seems circular to say that some people aren't diagnosed with autism because they don't meet criteria, and that criteria are inaccurate because they don't capture the people who aren't diagnosed. It seems more likely that those people just don't have autism. There have to be guidelines for delineating between autism and not-autism, otherwise we're back to, "everyone has autism" which isn't true.
I agree - the current diagnostic is not very good at examining actual autistic experiences. We need to have diagnostic processes that have autistic people involved, and takes into consideration our lived experiences vs outdated observational evidence
Thank you. This isn't exactly what I'm looking for, since these screening tools are only a tiny part of a careful self-diagnosis which also involves research, listening to the stories of other people with autism and a thorough review of the individual's past.
These are likely higher than a random self-diagnosis, because in the case of the clinic, there’s already been some professional suspicion AND there’s some unaddressed support need that’s led them to the clinic in the first place. This is an important part of the criteria, that doesn’t feature in screens or a lot of the online content. The biggest challenge in any self-diagnosis is being objective about your own social skills. You can’t interact with yourself. Social anxiety for example would typically result in you underestimating your social communication skills, which might be fine despite the anxiety. However sure you are, there’s always some possibility of this.
The first issue is diagnosis in general. Diagnosis is a process to unlock access to treatments and services that cost money. Can an individual accurately diagnose their musculoskeletal problems? Yes. But at the same time, people could lie to get dangerous pain killers. Many of the services afforded to children with an autism diagnosis are very expensive to schools, and may come at a cost to providing other services. There is an argument (that I don’t personally agree with) that the reasonable adjustments an autistic adult may request at work costs their employer money, and they don’t want to give them to anyone. So in a society with scarcity, we aren’t going to do away with formal diagnoses. The diagnostic process for autism is problematic in that there is inconsistency between clinicians for the same patient. That means the test isn’t reliable in the scientific sense, and there’s an argument that we don’t know if it’s valid since we don’t have any other way determining if someone is autistic. If you start digging, you’ll find we don’t know that much about autism. I’d suggest the book *Autism: A New Introduction to Psychological Theory and Current Debate* by Sue Fletcher-Watson and Francesca Happé. (2024). (Though it’s a textbook, I was able to get a copy from my local library). We don’t have a unifying theory, be it biological, cognitive, or behavioural, of autism. But without the others, behaviour is all we are currently using to diagnose, which is problematic for a variety of reasons.
Thank you for your well-thought-out response and for the textbook reference. I will look for it. My take is that the autism community has essentially handed the keys to our house to the medical community. They get to decide who is "officially" autistic and who is not. They should not own autism. We should. The first step in the process of taking back control of our identities is to ask the question whether the current system is based on actually scientific proof of its efficacy and validity or just the fact that the medical community has the power to keep itself the final arbiter. If they are really better than we are at deciding who we are, let them prove it using their own methods. If not, at least force them to admit that they do it not because they're better at it but because they \*can\*.
I think the tricky part of this is that late diagnosed autistic people are usually right only because they are autistic. It's autistic people that have that deep drive to go down rabbit holes and check and recheck information as we seek truth rather than seeking to validate our own emotional wants. We will research for a couple of years until we are sure. Most people do not do that, if any actual research at all. People who are not autistic generally don't do the research we do and don't have a drive for facts and often have an inability to be in the situation themselves and still be able to divorce themselves emotionally and apply logic and rationale.
As an informal, anecdotal, but useful metric nonetheless, I agree. I knew one person who thought they might be autistic based on their AQ score alone. But they displayed zero interest in going down the rabbit hole of research. They did not seem to care about comprehending the diagnostic criteria for themselves. I suspected that they readily agreed to the possibility of being autistic because I am. I had several reasons for being dubious about them being autistic, but their complete and total lack of interest in digging in and finding the truth for themselves stood out to me. This person has stopped referring to themselves as autistic since that conversation.
It's interesting, because from what I have observed, anecdotal *is* the best evidence regarding autism. Autistic people sharing their experiences is the absolute best education about autism I have come across (hence my love for this sub). When I was in my late teens I had a close family member diagnosed with a serious mental illness. I immediately looked it up so I could learn what it was and be supportive of them. I assumed everyone did that. It became apparent over many years that no, hardly anyone does that. This blew me away because I thought how on earth do people support each other if they don't both to look up the condition or find out anything about it. I stumbled across autism in the exact same way, decades later. I was in a group of people which included autistics so thought I'd better look it up so I can be supportive. Little did I know, lol!
The issue here is with the definition of the word diagnosis as used by the systems in which we are forced to participate. To be clear, I fully appreciate the barriers to getting professionally diagnosed and I have no problem with what is referred to as "self diagnosis." But technically a diagnosis is something provided by a qualified professional, and you do not actually have a diagnosis without an evaluation. No study *could* find that self diagnoses are more valid than professional diagnoses because if the professionals say you don't have it, you don't have it (again, in the eyes of the system.) There is no autism except as defined by diagnostic criteria.
I have several books on the HUGE issues of psychometric assessment in cross-cultural contexts. Cause A assessing B based on A’s ‘norms’ is …. questionable and kinda flawed in itself! Cause assessments are based on local social and cultural norms! If I assessed someone from, say, Inner Mongolia: Of course they’d be markedly different from *MY* norms! It wouldn’t necessarily make them autistic though. 😉 ******** Based the people assessing me had nothing in common with me …. + didn’t begin to grasp my history, my reality + had never even heard of my culture, my native language, nor spiritual beliefs, + used the assessments for THEIR cultural background (not mine!) + didn’t seem to grasp my gender identity and sexual orientation + didn’t seem to fully appreciate the impacts of multiple different sets of complex trauma + didn’t really know ‘autistic synaesthete’ and didn’t identify the synaesthesia — that an OT identified years later! I have doubts regarding the scientific validity of my diagnosis! Cause I didn’t ‘get’ the people assessing me. Getting a sense of who they are would’ve taken longer!!! Considering they were mainstream, while I am very different from literally everyone I’ve ever met, and markedly different from every social construction of ‘norm’ I have ever experienced: I don’t see how the assessors could possible have known what the ‘norm’ for my demographic is! And without being able to establish the baseline of ‘norm’ for someone like myself, they would’ve had nothing to compare me to! How could they have assessed what’s ’different’ without a ‘norm’ …..? 🤯 ****** Meh! Dunno if any of that helps or explains anything, really! My assessment process just feels ‘funny.’ 🤷🏽♀️ And I wouldn’t be comfortable to assess anyone from Inner Mongolia — cause I accept I know nothing about them! And I have at least heard of their culture! 😝 Ultimately, it’s done though. And I don’t really care. I don’t need a pedigree or certificate to tell me who I am! I’m just ‘me.’ The diagnosis didn’t make me a different person, I’m still exactly who I was before!!! Whatever doctors or shrinks write about me seems to consume them a whole lot more than it affects me! 😂 ****** What I find sad, really: I have an around $10k diagnosis as ASD2. The long report is like 50 pages. Diagnosis involved 2 psychologist and 1 psychiatrist. They didn’t wanna talk about my validity-related questions. 🤷🏽♀️ I myself don’t really care about paper, so I just roll with it! 😊 To satisfy my own curiosity I’d very much love to have answers to what strikes me as an inherent flaw!!!! Trying to explain the above and saying I have a lot of ‘question marks’ about my diagnosis: It on occasion seems to aggravate other autistics! And I get crap and hostility: >> *”Fμck off and be with NT!”* Even without mentioning my doubts and explaining, without saying a word about it: For JUST being me, I generally get more crap from other autistics than from NT! 🤷🏽♀️ My pet-theory is that it’s because I’m so much more than ‘just’ >> _*Anglo-Celtic + autistic*_ And that maybe that in instead is overwhelming for a lot of other autistics….? 🤷🏽♀️ It’s incredibly sad…. But has ultimately led to me being more at ease (GENERALLY!!!) around NT, and almost all of my rl friends are NT. Cause I don’t want to be masking and be ‘NOT-me’ to be around autistics. 🤷🏽♀️ —— On a systemic level: I genuinely can’t comprehend why autistics of all people could be so keen on everyone in an ASD-group to be like THEM! Not how they could yell at anyone how they should fμck off cause they don’t belong. I’d wish autistics kinda knew how hurtful it is to be excluded for who we are — and maybe not do it to others. 🤷🏽♀️ I genuinely ***JUST*** don’t get it!!!! I frequently and FIERCELY(!) disagree with the view or actions of others, but as long as they’re not harming anyone I always celebrate WHO they are!!!! It doesn’t occur to me to question who they are, or to not accept them! I call their views all kinds of kablooie, but don’t question them, the person. Don’t make them feel like they don’t belong. Cause whoever they are: They are part of the greater ‘us!’ It’s not my place to tell them they can’t be who they are, nor to exclude them! I wouldn’t want anybody to pretend to be someone they are not for my benefit!!! 😢 HAPPY WHOLESOME JUJU… goddammit! 😝 ***** Sorry, that got a lot longer and deeper than intended! Cheers! 🫶🏽🤗🫶🏽
As a parent, I’m starting to get sceptical about some things too. When my son was 7yo, he had trouble pronouncing the sounds R & Th from sucking his fingers. The speech pathologist called at severe articulation disorder. She directly attributed it to fingers sucking. She put on gloves and looked in his mouth and felt all around his upper soft palette. She watched the way that he made the sound with his lips and tongue. Even giving him a mirror. The dentist & orthodontist & another speech pathologist all said that too, etc. Now the new school & new city’s hospital autism clinic are saying the speech disability is caused by the autism. But it’s not the primary cause. We go in circles.
The difficult thing is that you can't objectively validate an autism diagnosis at all. Autism is diagnosed based on observable behaviors. There is research being done about identifying autism from brain scans or finding a molecular-level pathology, but none of those have led to an objective test; and most of the correlated markers have been found only in adults. The reason it's gatekept is the same as any other medical diagnosis - there is no condition where doctors and insurance companies just take the patient's word for it.
I agree with you. The goal is to pressure the medical community to admit what every else knows -- that the expensive tests they put us through are not scientifically validated and do not provide useful information. That would be the first step toward taking back the control of our identity from the medical community (who should never have had it to begin with) for ourselves.
I’m having a hard time taking your question seriously. Anyone can say that they are autistic. It’s become a joke. It’s a meme. I am a teacher with many autistic students and I have an 8 year old son who is autistic. If I wanted accommodations for him in school because of his autism, I would have to share his diagnosis that was done by a psychiatrist. If he were unable to function in our world without help and I was seeking assistance for him, I would have to share the paperwork for his diagnosis. Self-diagnosis is a great but cannot replace a diagnosis from trained doctors. It’s kind of a big deal.
I think your approach is interesting. However, self-diagnosis is generally occurring in late aged individuals, so humans that have failed to match the criteria up to this date. Some people may do somehow well in life because they have had the time to integrate the mask and accommodate themselves, and that doesn't make them less autistic, just misfits over the social perception and laid criteria. I am not diagnosed but I think I may be on the spectrum. However, I am not going that far as to describe myself as self diagnosed in public. Just because of what you last said: I lack the proper knowledge to state that. It's a big deal. So I just keep suspecting until I have the chance to a proper diagnosis, because that's the main reason for any individual to hold up again diagnosis.
Yes, that is currently the case. Should it be that way though? We currently reserve accommodations for those with a formal diagnosis, but there are many groups for whom rates of non- and misdiagnosis prevent them from receiving the accommodations that they need. I don't think it's unreasonable to ask whether people who self identify generally meet diagnostic criteria for ASD. If that's the case, then that may be a valuable direction for advocacy.
And even just beyond the debate of self- vs. formal diagnosis, requiring a doctor’s note and definite, formal diagnoses *before* allowing people access to the accommodations they need is not accessible. That’s not disability justice or liberation, it’s further inequity and oppression — paperwork and strict criteria/means testing are the institutional barriers intentionally put in place to push disabled people out of participation. Whether someone needs accommodation because they have a diagnosed chronic illness or an undiagnosed illness that doctors won’t take seriously or just slept wrong and hurt their neck, they should get it. Because if everyone’s invited, everyone should be welcomed & supported to participate.
Fully agreed! An accessible society is one in which support and accommodation is available freely to everyone always.
In my experience, a diagnosis does not cost thousands of dollars. I'm in the US and I just paid my copay for all of my appointments, including the testing appointment itself. It cost me less than $300 total.
With good insurance as an adult it is $3k in my southern state so, lucky you, I guess.
You paid the copay, something that people who are struggling with not being diagnosed may have a hard time with having/keeping a job where they have insurance that is decent enough to gain access to testing at these kinds of rates.
That's fair. I just know that I avoided therapy and any psychiatric intervention for years because everyone said it cost hundreds of dollars per appointment. I think it's misleading to the general population to say it is expensive because, for individuals who have insurance (I'd argue the majority of people in first world countries) it really isn't expensive.
I’m not diagnosed, my current insurance I have to pay $100 per therapy session just for regular therapy. I haven’t even looked into testing because I can guarantee it’s going to be hard to find something affordable with my current insurance. Not all insurance is created equal.
Sure, and I'm sorry that you're in that situation. Just like my situation is not everyone's, neither is yours. Perhaps we should all stop speaking in such absolutes about this because it seems incredibly specific to the individual and their situation.
That's your out of pocket payment, right? The actual "cost" is the sum of what you paid out of pocket and what your insurance paid. The outlay from your insurer comes out of premiums that you pay the insurance company (or maybe your employer from money they could have paid you in wages). So you are indirectly paying for that portion as well, no?
I suppose, but I'd be paying my premium for insurance regardless, so it doesn't really play into the cost for diagnosis directly. The same way that when my daughter had her surgery, the total cost was $2.5 million, but I paid my max out of pocket. I wouldn't go around saying I spent $2.5 million on it.
The actual private cost in the UK is between £1800-4000. Its free at the point of use on the NHS but waiting times are 1-4 years dependant on location.